Date: Jan 16, 2013 Author: Val Stilwell Source: Ventura County Star (
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When you get up in the morning, how do you remember all the things you need to do that day? Many people use a day-planner system, but what would you do if you couldn't read, write, or remember? How would you keep in mind your appointments, tasks, and social events?
Personally, I would have forgotten to take out my garbage this morning on the way to work without my handy day-planner reminding me-- which also reminded me that I have lunch with a colleague today. We made our plans last week when we ran into each other at the store.
So what do people with cognitive disabilities such as autism do? How do they plan their days and why is this important? It is estimated that currently there are between 750,000 and 1.5 million adults with autism. In 2012, the Centers for Disease Control and Prevention (CDC) estimated that the autism prevalence in the United States is 1 in 88 children (1 in 54 boys). By comparison, this is more children than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome - combined. According to a study conducted by Harvard University, the lifetime costs of treating and caring for an individual with autism is approaching $3 million. Researchers from Autism Speaks estimate the overall annual US costs have tripled to $126 Billion, which is greater than the entire GDP of 139 countries around the world.
Parents, states and federal officials, and other disabilities stakeholders have become very concerned, calling this trend an "epidemic". State agencies for adults with developmental disabilities are not geared up to handle the number of teens soon to enter the system and recognize that about only 6% of people with autism have a full-time job. Research also recognizes that the majority of costs related to autism are non-medical and incurred during adulthood, principally due to the cost of residential care as well as the loss of productivity, underemployment and unemployment among adults with autism. Services for adults are both lacking and expensive.
Autism researcher, Dr. David Mandell, Sc.D., of the University of Pennsylvania says in one recent interview, "We are paying for the costs of inaction and the costs of inappropriate action. Social exclusion of individuals with autism and intellectual disability, and exclusion of higher-functioning individuals from employment opportunities are increasing the burden not only on these individuals and their families, but on society as a whole."
There's an abundance of dialog about the need for teaching independent living skills and encouragement to train people with cognitive disabilities to be more independent, however, more often than not, the services are piecemealed and much less helpful than they could.
Weaving through all of the afore mentioned challenges, assistive technology researchers focused on self-management still see assistive technology as an important piece of a larger solution for which we need to set in motion. Focused on creating self-management tools, forward thinking researcher, Dr. Tom Keating, of one Oregon-based company called Cognitopia says, "Autism services can perform better by just starting with the fundamentals. For instance, personal organization is one of the most critical skills for independent living and taking personal control over one's life. Choosing activities, scheduling appointments, navigating transportation, and organizing essentials are key controls for a personal guide that builds esteem and independence." He says that planning how a day unfolds gives a person the clear advantage of successfully planning properly and instills a deep sense of accomplishment and self-sufficiency.
For Dr. Keating and others in the field like him, the notion that it cannot be understated that the importance of teaching personal organization to those with autism is critical to a person's success as an adult. Self-sufficiency directly influences levels of independence and clearly lowers cost. A person who can use public transit versus specialized para-transit services can save a mid-size city more than $4,500 annually. With 500,000 teens with ASD coming of age in the next ten years, the support costs are going to be crushing -- around $200-400 billion.
The responsibility of teaching someone how best to care for themselves falls to the caregivers and teachers in an individual's life. While there may be challenges of teaching new methods, today's assistive technology is opening doors and providing profound opportunities for individuals with autism and other cognitive disabilities. An example of this would be the use of a mobile day planner that uses pictures instead of words to plan and carry out activities with prompts and reminders throughout the day.
The concept of teaching about personal organization via a visual, digital day-planner may seem like a far-flung thought but it's really not that far out and today's assistive technology tools makes the task even easier.
For instance, simple task and routine imaging boards are recognized teaching tools in many special education classes and homes so the concept to integrate imaged-based personal organization digitally is truly not that foreign. "Making it fluid and mobile is the new switch -- but it's not difficult as one would think." says Dr. Keating. Inspired by caring for his adult autistic brother, James, Dr. Keating says, "It's about simple user interface and universal design known as UDL. No two people are alike so it's important to create simplified tools that can easily be customized to fit a user's needs such as the visual scheduling tool called Picture Planner that came from our development labs."
Although training for personal organization should start as early as possible, transition programs and IEP strategies are two identifiable areas where assistive technology can be introduced and utilized to support a more independent living skill approach. Generally it's either teachers or family members who identify the prospective assistive technology tools-- but it's also an area beleaguered with the overworked, underfunded, and a large array of variable disability needs. This is also precisely where the pipeline to access gets a little bogged down.
With that being said, we're seeing more proactive parents press for assistive technology and the teachers who focus on integration are proving successful. With simple daily living support tools like image-based personal planners, Tommy remembers to take his garbage out on Wednesdays, Suzi catches the bus to return her library books on Tuesdays, and John makes plans to go bowling with his friends on Friday -- just like everyone else.
By utilizing assistive technology, self-directed personal organization can be integrated as a practical, life-long support tool for independence so that people with cognitive disabilities can manage and participate with their daily living schedules as they navigate through work, school, home, and even social events.
Most importantly and the bottom line says Dr. Keating, "While we encourage people with cognitive disabilities such as autism to be more independent, how can we expect people to develop independent living or self-determination skills if we don't give them tools that allow them to behave in self-determined and independent ways?
Val Stilwell, MSCS, is the Director of Communications at Cognitopia in Eugene, Oregon and can be reached at vstilwell@cognitopia.com. For more information, visit www.cognitopia.com.
Read more: http://www.vcstar.com/news/2013/jan/16/personal-organization-gives-independence-to-those-/#ixzz2fqnJPSse
- vcstar.com
